Posts
I know it's been a long time since I updated, sorry about that.
At our last meeting with school, we talked about some ideas for other people in Tyler's life to work/play with him. Just new ways to interact where Tyler can learn. So we received the cards in the mail and I just wanted to post them here so everone can have an idea of ways to play with Tyler. I know that many people are still hesitant to interact with him cause they may not know how or know how to handle Tyler if he's upset and I also know that many people forgot to talk to Tyler rather than about him. Ben does this often actually, he's always talking about Ty Ty instead of to him. I really like the ideas that school had so here they are:
1) Look through photo album and have him point to people that you name.
2) Put objects from house into a bag and pull out items one at a time and so a funny action with the item and then give to Tyler to imitate.
3) make a tape of animal sound effects and have him sign what animal/sound he hears?
4) play tape/cd of songs and have him do motions to songs.
5) Make a placement for Tyler that shows where the cup, plate, spoon, etc. go and havehim learn to set the table.
6) Put picture cards he likes scattered on the ground face down and let Tyler choose a card, turn it over and name it.
7) (LOVE THIS IDEA) give Tyler a puzzle board and keep the pieces, sit 5 feet apart and put a puzzle piece that he asks for in a truck/vehicle and push it to him. He puts it in the puzzle and pushes the truck back for another puzzle piece.
8) Get out toothbrush, brush, diaper, cup, spoon, etc. and have Tylr use this with a Teddy Bear (this one may be tough for people that do not nkow how to keep him engaged cause they is not the most rewarding/stimulating activites for him.
9) Put doll clothes in a bag and have him indicate (pointing, gesture, etc.) what clothes to put on and dress a teddy bear together.
10) read a book together and have him point to pictures and you name them.
And believe it or not, Tyler starts school again on Monday! How fast the summer is already going. He'll be in school 3 days a week until July 29 and then starts splash camp (5 days week) the following week. Then we'll be back to school in September.
As for Ben, I got to spend a lot of one on one time with ben this weekend and it was great, he and I both really enjoyed it. we are still looking for reasons/ways to get Ben interested in potty training. We've tried all kinds of incentives for when he goes such as candy, stickers, etc. Also used a trip to the zoo, all these things that he supposdely reallylikes and raerly gets to do but he's just not interested. I even boughth im big boy underwear yesterday that had lightning mcqueen on them and he liked them but had no trouble peeing in them and it didnt' seem to bother him that he did pee in them and they were wet. So I'm just not sure what our next steps are. Maybe a break and then reintroduce it again.
Tuesday, June 30, 2009
Friday, June 26, 2009
6/26/09
Please thank your representatives who supported the autism insurance bills.. there is a list of supporters on this website so you can see if yours is on the list.
http://house.michigan.gov/replist.asp?lstcounty=&txtdistrict=&txtzip=&sortby=2
I sent a personalized message to my representative but also wrote a generic one for others to send, if you don't know what to say.. it only takes a minute:
Dear Representative ():
Thank you for supporting the autism insurance bills. As you know autism is a devastating disorder that affects one out of every 94 boys in the US, many of these children cannot even speak. Professionals recommend that children with autism receive intense ABA therapy for up to 40 hours a week and if administered properly, many of these kids can enter grade school, indistinguishable by their peers. At a cost of nearly $70,000 a year, families are often left to make heart-wrenching decisions regarding the care for their child. If left untreated, autism is a vicious disorder that can cause life-long behavior problems. These children are our future, by supporting these bills, you are giving so many children a chance at a life filled with happiness and success. Thank you!!!!
http://house.michigan.gov/replist.asp?lstcounty=&txtdistrict=&txtzip=&sortby=2
I sent a personalized message to my representative but also wrote a generic one for others to send, if you don't know what to say.. it only takes a minute:
Dear Representative ():
Thank you for supporting the autism insurance bills. As you know autism is a devastating disorder that affects one out of every 94 boys in the US, many of these children cannot even speak. Professionals recommend that children with autism receive intense ABA therapy for up to 40 hours a week and if administered properly, many of these kids can enter grade school, indistinguishable by their peers. At a cost of nearly $70,000 a year, families are often left to make heart-wrenching decisions regarding the care for their child. If left untreated, autism is a vicious disorder that can cause life-long behavior problems. These children are our future, by supporting these bills, you are giving so many children a chance at a life filled with happiness and success. Thank you!!!!
Thursday, June 25, 2009
6/25/09
So you may or may not be aware but the autism insurance bills for michigan passed through the house yesterday (great birthday present for me!!). Next it needs to pass through the senate which is going to be harder. They really suggest writing your senator and explaning your personal relationship with autism rather than form letters. So if any/all of you reading this could do that, i'd greatly appreciate it!
http://www.legislature.mi.gov/ documents/ 2009-2010/ billengrossed/ House/htm/ 2009-HEBH- 4476.htm
http://www.legislature.mi.gov/documents/2009-2010/billengrossed/House/htm/2009-HEBH-4183.htm
If you do not know which senator is for your district, here is a link where you can determine. http://senate.michigan.gov/
http://www.legislature.mi.gov/ documents/ 2009-2010/ billengrossed/ House/htm/ 2009-HEBH- 4476.htm
http://www.legislature.mi.gov/documents/2009-2010/billengrossed/House/htm/2009-HEBH-4183.htm
If you do not know which senator is for your district, here is a link where you can determine. http://senate.michigan.gov/
Monday, June 22, 2009
6/22/09
Tyler had a very good weekend considering he either has a cold or allergies ar ebothering him. Ben spent the weekend with his grandma and great grand parents so itw as just us and Tyler this weekend. What a difference in makes in the time/quality you can give one child. Anyway, we went to my sisters openhouse and TYler did very well. The amount of people didn't bother him at all, in fact, he did great with everyone. We brough lots for him to do so that he wouldnt' just run in circle and my cousins took him on a few golf cart rides which he loved. I'm very happy with the way things went. I also had an opportunity to ask him to pick up his cup, last time I did that he was beside himself mad at me for asking, this time he just did it and handed it to me without objection. Its one thing to throw down cups at our house,w hich I still don't allow but definetly not respectful to throw them down in someone else's house so I'm trying to teach him to hand it to someone or put it on a table when he's done.
Tyler did something really cool yesterday morning when we were at my aunts. I was sitting on the chair and he walked by me, looked at me and waved hi and just kept walking. That's the first time hes' even chosen to communicate with me for a purely social reason. He didn't want anything from me and I wasn't engaged with him at the time, he just wanted to say hi. HUGE step forward.
He also did really well at the sprinkler pad yesterday. For some reason teh "break" time for teh water is extensive.. i.e. 20 minutes of rest between the 5 minutes the sprinklers work. We weren't sure what the problem was but if this would ahve been last year, Tyler would ave been on the cement trying to bang his head out of frustratino. I couldn't warn him it was shutting off cause I didn't nkwo when it was coming and I had no idea it was gonna take a full 20 mintues to come back on so tht waiting/patience involved was a lot foa typical child let along Tyler who can't understand why I can't fix it. he did fantastic with the long breaks and never once even screeched.
Tyler has begun screaming a bit, in a high pitched sound but is very happy. I'm equating this to a baby who had just really discovered their voice and that they are in charge of how long or short and how high or low each sound is. It may annoy others and I'm sure people look at him thinking ok he's a toddler, not appropriate to be screeching, however I see this as a very very positive sign. Hopefully next will come babblying with many differenc onstants and vowels in the same sequence and then speech. we'll see.. but I don't mind the screaming.
That's about it.. I seem to have caught some sort of bug this weekend so we'll be taking it easy this week and it may take a while to get another update.
Tyler did something really cool yesterday morning when we were at my aunts. I was sitting on the chair and he walked by me, looked at me and waved hi and just kept walking. That's the first time hes' even chosen to communicate with me for a purely social reason. He didn't want anything from me and I wasn't engaged with him at the time, he just wanted to say hi. HUGE step forward.
He also did really well at the sprinkler pad yesterday. For some reason teh "break" time for teh water is extensive.. i.e. 20 minutes of rest between the 5 minutes the sprinklers work. We weren't sure what the problem was but if this would ahve been last year, Tyler would ave been on the cement trying to bang his head out of frustratino. I couldn't warn him it was shutting off cause I didn't nkwo when it was coming and I had no idea it was gonna take a full 20 mintues to come back on so tht waiting/patience involved was a lot foa typical child let along Tyler who can't understand why I can't fix it. he did fantastic with the long breaks and never once even screeched.
Tyler has begun screaming a bit, in a high pitched sound but is very happy. I'm equating this to a baby who had just really discovered their voice and that they are in charge of how long or short and how high or low each sound is. It may annoy others and I'm sure people look at him thinking ok he's a toddler, not appropriate to be screeching, however I see this as a very very positive sign. Hopefully next will come babblying with many differenc onstants and vowels in the same sequence and then speech. we'll see.. but I don't mind the screaming.
That's about it.. I seem to have caught some sort of bug this weekend so we'll be taking it easy this week and it may take a while to get another update.
Wednesday, June 17, 2009
I often think about things that i want to put in the blog but by the time I actually am writing, I forget half of them and then when I remember what they were, I can't remember if I just thouht about writing them or I actually put them in the blog. So I'm sorry if this is a repeat story.
Steve's mom told me about a little girl who sings the national anthem at various sporting events. I also caught a glimpse of her on a talk show where they were mentioning how the Orlando Magic had never lost when she sang before the game. The key is that she has autism, specifically PDD-NOS. She has an incredibly amazing voice at 7 years old but at 3 years old she could not talk. Although Tyler's diagnosis is more severe than hers, it still gives you hope. She's came so far. Here are some links where you can read about her story and see clips of her singing. http://www.ginachildperformer.com/id1.html or http://www.youtube.com/user/ProdigyGina
So put yourself in Tyler's shoes, he understand what you say to him for the most part but knows that he cannot talk to you. So when he wants to make a point or is frustrated about something, etc. and can't actually speak it or doesn't know all the signs he needs to make it happen, imagine how frustrating that is for him. So I make it a point, to make sure that he knows I understand him and if for some reason I don't understand why he's saying, I really really try to get to the bottom of it. So at the lecture hal the other day, he was making obvious gestures that he was ready to get out of the chair and looking to me to help and to fix it and rescue him. I gave him lots of squeezes and said I know, I undertand, we are almost done, you are doing great..just a few more minutes. I think him just knowing that I understand what he wants, etc. makes those moments that arent' so comfortable for him, more bearable. I mean isn't that what we all want, jsut for someoen to understand when something makes us mad, even if we can't fix it for them. So the other day, Tyler wanted me to go upstairs with him, for one reason or another i couldn't, but grandma was happy to go upstairs and read with him (which is what he wanted, he has a lot mor ebooks upstairs than downstairs). He was getting frustrated that I was not walking up the stairs with him. Grandma was great and wa trying to walk up with himbut he was getting more frustrated. I asked that she not grab his hand or he grab hers. Tyler kinda does what he's supposed to do so if someone grabsh is hand to lead him somewehre, he'll take it, even if he doesn't want to cause that's what you aer supposed to do when someone grabs your hand. So I asked that they stop holding hands and I looked at Tyler and said I knwo you want mommy to go upstairs, but I cannot go right now. You have a choice, you can go upstairs and read books with grandma or you can stay downstairs where mommy is and read books with granma. Mommmy cannot go upstairs with you right now. Even though he wasn't 100% happy with this explanation, he understood he had a choice and he made it. He chose to stay downstairs and read books with grandma so he could be by me too. It's really important for me to know that he understands that I understand what he wants if that makes sense. I think that's why many kids have such behavior issues, especially whent hey can't talk becuase people just pick them up or physically move them or lead them somewhere possibly undesireable when that child wasn't able to fully get their point accross sot hey melt down becuase they didn't get what they wanted and they weren't given an opportunity to communicate what they wanted, even if they can't get what they want, I think it helps to show that you at least understand it and then offer an alerternative. I wish I could explain this better and hopefully it makes sense. I just always want Tyler to know that I understand his feelings since it's so hard for him to express them.
Ben was super cute with Tyler last night. Ben was playing dinosaur games on the computer and there are a couple that Tyler likes to watch too but many times Ben gets annoye dwith Tyler cause he likes to get so close to the screen. Steve said that yesterday, Ben actualyl turned the computer screen so Tyler could watch too. I really think he's starting to come around like everyone said he would. Once he's old enough to understand it all. At the park the other day he was talkign to me about Ty Ty. He often talks to me intead of Tyler when he wants Tyler to do something. The funny thing is, many people do this. They think since Tyler can't talk that he can't understand or hear what you are saying, not true. So it old Ben that he can talk to Tyler as often as he'd like because Tyler can hear him adn loves to hear his voice and even though he doesn't show that he's listening, he can defetinly hear him and one day hopefuly Tyler will be able to talk back to him. I really hope they can have a good relationship one day, it will be so good for both of them.
Steve's mom told me about a little girl who sings the national anthem at various sporting events. I also caught a glimpse of her on a talk show where they were mentioning how the Orlando Magic had never lost when she sang before the game. The key is that she has autism, specifically PDD-NOS. She has an incredibly amazing voice at 7 years old but at 3 years old she could not talk. Although Tyler's diagnosis is more severe than hers, it still gives you hope. She's came so far. Here are some links where you can read about her story and see clips of her singing. http://www.ginachildperformer.com/id1.html or http://www.youtube.com/user/ProdigyGina
So put yourself in Tyler's shoes, he understand what you say to him for the most part but knows that he cannot talk to you. So when he wants to make a point or is frustrated about something, etc. and can't actually speak it or doesn't know all the signs he needs to make it happen, imagine how frustrating that is for him. So I make it a point, to make sure that he knows I understand him and if for some reason I don't understand why he's saying, I really really try to get to the bottom of it. So at the lecture hal the other day, he was making obvious gestures that he was ready to get out of the chair and looking to me to help and to fix it and rescue him. I gave him lots of squeezes and said I know, I undertand, we are almost done, you are doing great..just a few more minutes. I think him just knowing that I understand what he wants, etc. makes those moments that arent' so comfortable for him, more bearable. I mean isn't that what we all want, jsut for someoen to understand when something makes us mad, even if we can't fix it for them. So the other day, Tyler wanted me to go upstairs with him, for one reason or another i couldn't, but grandma was happy to go upstairs and read with him (which is what he wanted, he has a lot mor ebooks upstairs than downstairs). He was getting frustrated that I was not walking up the stairs with him. Grandma was great and wa trying to walk up with himbut he was getting more frustrated. I asked that she not grab his hand or he grab hers. Tyler kinda does what he's supposed to do so if someone grabsh is hand to lead him somewehre, he'll take it, even if he doesn't want to cause that's what you aer supposed to do when someone grabs your hand. So I asked that they stop holding hands and I looked at Tyler and said I knwo you want mommy to go upstairs, but I cannot go right now. You have a choice, you can go upstairs and read books with grandma or you can stay downstairs where mommy is and read books with granma. Mommmy cannot go upstairs with you right now. Even though he wasn't 100% happy with this explanation, he understood he had a choice and he made it. He chose to stay downstairs and read books with grandma so he could be by me too. It's really important for me to know that he understands that I understand what he wants if that makes sense. I think that's why many kids have such behavior issues, especially whent hey can't talk becuase people just pick them up or physically move them or lead them somewhere possibly undesireable when that child wasn't able to fully get their point accross sot hey melt down becuase they didn't get what they wanted and they weren't given an opportunity to communicate what they wanted, even if they can't get what they want, I think it helps to show that you at least understand it and then offer an alerternative. I wish I could explain this better and hopefully it makes sense. I just always want Tyler to know that I understand his feelings since it's so hard for him to express them.
Ben was super cute with Tyler last night. Ben was playing dinosaur games on the computer and there are a couple that Tyler likes to watch too but many times Ben gets annoye dwith Tyler cause he likes to get so close to the screen. Steve said that yesterday, Ben actualyl turned the computer screen so Tyler could watch too. I really think he's starting to come around like everyone said he would. Once he's old enough to understand it all. At the park the other day he was talkign to me about Ty Ty. He often talks to me intead of Tyler when he wants Tyler to do something. The funny thing is, many people do this. They think since Tyler can't talk that he can't understand or hear what you are saying, not true. So it old Ben that he can talk to Tyler as often as he'd like because Tyler can hear him adn loves to hear his voice and even though he doesn't show that he's listening, he can defetinly hear him and one day hopefuly Tyler will be able to talk back to him. I really hope they can have a good relationship one day, it will be so good for both of them.
Tuesday, June 16, 2009
6/16/09
Tyler did pretty good today. He and I were both a little intimidated by all the people in the room. It's a rather short (depth wise) room with very high stadium seating and we were being videoed and shown on a huge screen in the front of the room just behind us. Anyway, Tyler woke up with a runny nose so he wasn't quite feeling 100% and was a bit more irritable today than normal, so when considering that he did very well. he tolerated the "birthday party" well when he clearly wanted to get down and occasionally gritted his teeth at Susan. He had to sit for the party and play with the GFCF playdoh which was supposed to be the cake. He did participate in the putting the "candles" in though event hough he wasnt' happy about it. I gave him lots of squeezes and let him know it would just be a few more minutes. he also initiated a few signs which was nice. all and all she said that he did better than she had expected (she hadn't' watched his last ADOS but planned to watch the video of it after this session as to not alter her expectations) and as long as people learned from the session than it's a success! He really liked the balloon part and was some what interested in the bubbles. I'm really glad we did our practice session so he was familiar with the room and with her, it made quite a difference adding all those people in the room. Steve and Tyler have a routine where Tyler lays down and signs swing and Steve swings him by his legs in the air and Tyler loves it, he requested that a few times today and I did it a couple of times to help him stay regulated and engaged with the activities. we also played "dog" at one point to get him happy again. Even though he was frustrated today he never got overly upset where he was crying or went to bang his head or anything so again compared to where we used to be (cause he was asked to do some not fun/not interesting things) he's really come a long way.
So we said goodbye to the parent support group for the summer, it will start back up in the fall when school starts back up. Tyler goes back to preschool after the 4th of July holiday, although this time it's for 3 days a week instead of 5.
So we said goodbye to the parent support group for the summer, it will start back up in the fall when school starts back up. Tyler goes back to preschool after the 4th of July holiday, although this time it's for 3 days a week instead of 5.
Monday, June 15, 2009
6/15/09
I had wanted to mention this a week ago but am pretty sure I forgot. On the last week of school, Tyler and I had gotten to school a bit early one day and he wanted to ride one of the bikes stored by teh classroom. He got on the bike and headed down the hallway and wanted to turn onto the main hallway. Lots of kids were coming in so I wouldn't let him go that way, I turned him around to go back the way he came. Well that did not go over so well, so we had a stand off there in the middle of the hallway. Have I mentioned yet how much I love that school and all the people, they all know exactly what's going on, they've been there before and they do not judge all. The goal was in some way, i.e. riding or pushing, Tyler needed to put his bike back where it belonged. IN order to do this, he needed to stand up which he was refusing to do and he was sobbing. I attempted to ignore him and walk away (about 7 feet) which caused him to stop crying but not get off his knees, as soon as I said "stand up" he went to bang his head so I ran back over to block him from injuring himself but at that point i knew my strategy of keeping my distance would nto work cause he would injure himself which I can't allow. So anyway, his parapro by now was also there and asked if I wanted her to take over and I said no, I placed the demand for him to stand so it was important to me to have him stand before I left. So when he finally did stand, he got lots of hugs and kisses and praise and then together we pushed the bike back into place and walked with the parapro into class and I kissed him good bye (the teacher had also seen the stand off along withe veryone else so they all knew what was going on). So when I got out in the car, it dawned on me that I was wearing a skirt that day and since I was kind of squatting I may very well have been revealing a little too much to everyone so I sent a quick apology to the teacher of which she got a big laugh. Gotta find humor in life right!
We had another stand off this weekend although this one only lasted a few minutes. The school stand off was at least 10. So Tyler is in a habit of throwing down his sippy cup when he's done drinking, wherever it is that he finishes drinking. So he did that this weekend, through it down in the middle of the living area. So I said, give mommy your cup. He got made and kind of through himself down. he'd try to kind of scooch away from me and I'd sit him back up straight and near the cup and say give mommy the cup. Grandma and Dad both agreed that he knew exactly what I was asking of him and was just being stubborn. So long story short, I can be much more stubborn than eithe rof the boys and eventually Tyler did pick up his cup and hand it to mommy, yeah! baby steps:)
Friday night was just me and the boys and we attempted our first bike ride with just one parent. The boys are gettnig good at peddaling now and I felt pretty confident that Ben would listen to my stop requets if he got to far so we tried it (including Clifford). It went really really well. There were only 2 times it got hectic when Iw as trying to help the boys down a hill and pushing both bikes and Clifford was kind of running between everything, other than that, it was great. In fact, there were times that Ben was intentionally riding behind Tyler to let him go first and if he had to stop he would so that he wouldn't pass Tyler. Very cute.
Saturday we went ot the park with grandma and we ran into a Dad who had brought his twins to the park. I knew the boy looked familiar and then I heard the names and realized they used to go the toddler group with Tyler when Ty went to Lenawee County. it was great to see them and good for Steve's mom to see too. Owen if I remember correctly hadn't actually been diagnosed yet when we met him but was likely going to be classified as having high functinoing autism, Grace was neurotypical. so I had kind of bonded with that mom since we had the unique dynamic of having twins with only one having autism. Anyway, Owen and Ben were playing a lot together and Grandma got to see what a high functioning kid with autism looks like compared to Tyler. There is a drastic difference between them, Grandma said she couldn't even tell that anything was going on with Owen.. And in esssence that si really my hope for Tyler that he grows into a little boy that may still have autism but is able to fully functino in society and may just be a bit quirky.
Oh, Grandma taught Tyler how to spell hsi name. Give him an alphabet and ask him to spell his name and he'll point to all the appropriate letters, grandma is very proud of herself and we are too :)
We took the boy swimming on Sunday and that was fun. steve kind of whished Tyler around in the water (it was very cold) and ben played on the steps with a couple of other kids. both of them had a ball. Dad worked on Tyler getting him to make sounds before steve would whoosh him off the steps into the water. Tyler also seemed to really want to stick around us and nto take off running or wandering so my comfort zone is increasing just a bit on letting him get a bit further from me than normal. Slowly but surely we are getting there. Everyone in parent group says it comes, the 6 and 7 year old are just learning the dangers if the road and not to talk to strangers, etc. Just takes them longer to grasp all those concepts, so bear with us as it may seem we are overprotective when we were out and about with TYler but we are just tryign to keep him safe.
Tomorrow is Tyler and my big day at U of M. Wish us luck in that lecture hall with all those people. Hopefully our preparation in doing a practice run will pay off and Tyler will stay regulated and happy. I really love that we are helping out so many kids that don't even know it yet by participating in this training so hopefully all goes well.
Some not so good news on the autism insurance front. The detroit news printed an inaccrurate article in the paper and there are some other issues coming up in regards to mental health parity, so if you haven't alrady, please email your representatives on the importance of these bills.
We had another stand off this weekend although this one only lasted a few minutes. The school stand off was at least 10. So Tyler is in a habit of throwing down his sippy cup when he's done drinking, wherever it is that he finishes drinking. So he did that this weekend, through it down in the middle of the living area. So I said, give mommy your cup. He got made and kind of through himself down. he'd try to kind of scooch away from me and I'd sit him back up straight and near the cup and say give mommy the cup. Grandma and Dad both agreed that he knew exactly what I was asking of him and was just being stubborn. So long story short, I can be much more stubborn than eithe rof the boys and eventually Tyler did pick up his cup and hand it to mommy, yeah! baby steps:)
Friday night was just me and the boys and we attempted our first bike ride with just one parent. The boys are gettnig good at peddaling now and I felt pretty confident that Ben would listen to my stop requets if he got to far so we tried it (including Clifford). It went really really well. There were only 2 times it got hectic when Iw as trying to help the boys down a hill and pushing both bikes and Clifford was kind of running between everything, other than that, it was great. In fact, there were times that Ben was intentionally riding behind Tyler to let him go first and if he had to stop he would so that he wouldn't pass Tyler. Very cute.
Saturday we went ot the park with grandma and we ran into a Dad who had brought his twins to the park. I knew the boy looked familiar and then I heard the names and realized they used to go the toddler group with Tyler when Ty went to Lenawee County. it was great to see them and good for Steve's mom to see too. Owen if I remember correctly hadn't actually been diagnosed yet when we met him but was likely going to be classified as having high functinoing autism, Grace was neurotypical. so I had kind of bonded with that mom since we had the unique dynamic of having twins with only one having autism. Anyway, Owen and Ben were playing a lot together and Grandma got to see what a high functioning kid with autism looks like compared to Tyler. There is a drastic difference between them, Grandma said she couldn't even tell that anything was going on with Owen.. And in esssence that si really my hope for Tyler that he grows into a little boy that may still have autism but is able to fully functino in society and may just be a bit quirky.
Oh, Grandma taught Tyler how to spell hsi name. Give him an alphabet and ask him to spell his name and he'll point to all the appropriate letters, grandma is very proud of herself and we are too :)
We took the boy swimming on Sunday and that was fun. steve kind of whished Tyler around in the water (it was very cold) and ben played on the steps with a couple of other kids. both of them had a ball. Dad worked on Tyler getting him to make sounds before steve would whoosh him off the steps into the water. Tyler also seemed to really want to stick around us and nto take off running or wandering so my comfort zone is increasing just a bit on letting him get a bit further from me than normal. Slowly but surely we are getting there. Everyone in parent group says it comes, the 6 and 7 year old are just learning the dangers if the road and not to talk to strangers, etc. Just takes them longer to grasp all those concepts, so bear with us as it may seem we are overprotective when we were out and about with TYler but we are just tryign to keep him safe.
Tomorrow is Tyler and my big day at U of M. Wish us luck in that lecture hall with all those people. Hopefully our preparation in doing a practice run will pay off and Tyler will stay regulated and happy. I really love that we are helping out so many kids that don't even know it yet by participating in this training so hopefully all goes well.
Some not so good news on the autism insurance front. The detroit news printed an inaccrurate article in the paper and there are some other issues coming up in regards to mental health parity, so if you haven't alrady, please email your representatives on the importance of these bills.
Thursday, June 11, 2009
6/11/09
There was more good news on the autism insurance front this week, if you are interested check it out: http://autisminsurancemi.blogspot.com/.
Tyler had a good night last night. He was making lots and lots of sounds, even daycare commented on how she was hearing new sounds. Dad did a great job of gros smotor play with Tyler that really got him babbling. Dinner also went well, he was doign good at feeding himself, but did ask to get down a few times to play a bit but we got him back in the chiar. I forgot to say on the blog the other day that I accidentally made him vomit at dinner. Many kids if they eat something they dno't like they'll just spit it out, Tyler's response is much more drastic becuase he feels it more drastically than a normal person. So I tried to sneak in some refried beans while he was distractd with something becuase sometimes he may like it and just not be willing to eat it based on the way it looks. Anyway, he did not like it and before I could reach in and get it back out, he vomited. Oopsss sorry buddy. Luckily it did not affect his desire to eat the food that he actually did like. But dinner last night went well. We all went for a walk/bike ride after dinner. The boys are getting really good at peddaling their bikes even up the small hills. I discovered yesterday that singing and standing in front of Tyler and walking backwards, really motivates him to keep peddaling and keeps him engaged so we did lots of singing yesterday which was fine. We also tried to a lot of signs for things we saw while we were out, trees, airplans, leaves, etc.
When we go on walks, I usually keep at least one toy in the back of his bike in case we stop and talk to any neighbors. Last night Ben and Dad and Clifford were quite a a ways in front of us and we saw them talking to some neighbors and kids. By the time Tyler and I got over there Ben was riding his bike around the cul de sac with one of the little girls so Tyler and I kind of parked by the adults and I got out his phone to play with. He did very well at staying with us and understanding that we were not gonna be riding bikes for a few minutes. He did get bored with the phone though and then he asked me if we could leave (can't really explain how he does that, but he always has a way of getting his point accross). So by then some other little kids had come up to pet Clifford so I asked if they would play ring around the rosie with us so that was great, we played maybe only 3 or 4 times but Tyler participated in the group without hesitation and got a kick out of all the kids falling down. Then we moved on to simon says, Ben was doing good on his own so I helped Tyler play simon says and he never got frustrated or anything. We played for a few minutes and then he kind of started runnign a bit so we just played some gross motor games, swinging, etc. and soon after it was time to head home for bed. It was just really great to see him play with other kids, even though I supported him through it all, he ws so happy doing it and niterested in doing it. Last summer was completely different, we couldn't get him to stay in a yard and he wasn't intersted in anything other than walking on the sidewalk and stopping was very frustrating for him. GO TYLER!
So the other cool thing.... right after dinner Tyler was playing on one of his computer games. One of the games on there is really just him pushing a letter and the computer saying the letter. This can get stimmy for him so we look for ways to engage him and make it more functinoal. Anyway, I tried something new. I started making the sound of a letter and then he'd have to pick the letter I was making the sound for. So I'd go "ahhhhh" and he'd push A and I'd say zzzzzzzzz and he'd push z, etc. He seemed to really like doing this and after he'd get it right I'd sing the little leapfrog jingle (the a says ahhh, the a says ahh, every letter makes a sound, teh a says a), it was his reward for getting it right. We had lots of fun doing this and once again I realized that Tyler knows so much more than we know.... He didn't get any of them wrong which means he now knows all his letters (captials and little), shapes, numbers (at least 1 - 10) colors, and now his letter sounds.
Tyler had a good night last night. He was making lots and lots of sounds, even daycare commented on how she was hearing new sounds. Dad did a great job of gros smotor play with Tyler that really got him babbling. Dinner also went well, he was doign good at feeding himself, but did ask to get down a few times to play a bit but we got him back in the chiar. I forgot to say on the blog the other day that I accidentally made him vomit at dinner. Many kids if they eat something they dno't like they'll just spit it out, Tyler's response is much more drastic becuase he feels it more drastically than a normal person. So I tried to sneak in some refried beans while he was distractd with something becuase sometimes he may like it and just not be willing to eat it based on the way it looks. Anyway, he did not like it and before I could reach in and get it back out, he vomited. Oopsss sorry buddy. Luckily it did not affect his desire to eat the food that he actually did like. But dinner last night went well. We all went for a walk/bike ride after dinner. The boys are getting really good at peddaling their bikes even up the small hills. I discovered yesterday that singing and standing in front of Tyler and walking backwards, really motivates him to keep peddaling and keeps him engaged so we did lots of singing yesterday which was fine. We also tried to a lot of signs for things we saw while we were out, trees, airplans, leaves, etc.
When we go on walks, I usually keep at least one toy in the back of his bike in case we stop and talk to any neighbors. Last night Ben and Dad and Clifford were quite a a ways in front of us and we saw them talking to some neighbors and kids. By the time Tyler and I got over there Ben was riding his bike around the cul de sac with one of the little girls so Tyler and I kind of parked by the adults and I got out his phone to play with. He did very well at staying with us and understanding that we were not gonna be riding bikes for a few minutes. He did get bored with the phone though and then he asked me if we could leave (can't really explain how he does that, but he always has a way of getting his point accross). So by then some other little kids had come up to pet Clifford so I asked if they would play ring around the rosie with us so that was great, we played maybe only 3 or 4 times but Tyler participated in the group without hesitation and got a kick out of all the kids falling down. Then we moved on to simon says, Ben was doing good on his own so I helped Tyler play simon says and he never got frustrated or anything. We played for a few minutes and then he kind of started runnign a bit so we just played some gross motor games, swinging, etc. and soon after it was time to head home for bed. It was just really great to see him play with other kids, even though I supported him through it all, he ws so happy doing it and niterested in doing it. Last summer was completely different, we couldn't get him to stay in a yard and he wasn't intersted in anything other than walking on the sidewalk and stopping was very frustrating for him. GO TYLER!
So the other cool thing.... right after dinner Tyler was playing on one of his computer games. One of the games on there is really just him pushing a letter and the computer saying the letter. This can get stimmy for him so we look for ways to engage him and make it more functinoal. Anyway, I tried something new. I started making the sound of a letter and then he'd have to pick the letter I was making the sound for. So I'd go "ahhhhh" and he'd push A and I'd say zzzzzzzzz and he'd push z, etc. He seemed to really like doing this and after he'd get it right I'd sing the little leapfrog jingle (the a says ahhh, the a says ahh, every letter makes a sound, teh a says a), it was his reward for getting it right. We had lots of fun doing this and once again I realized that Tyler knows so much more than we know.... He didn't get any of them wrong which means he now knows all his letters (captials and little), shapes, numbers (at least 1 - 10) colors, and now his letter sounds.
Tuesday, June 9, 2009
060909
We had a great meeting with Tyler's teacher and therapists today. We talked about how far Tyler has come this year including his awareness and involvement of what's going on around him, his ability to identify over hundreds of objects, and his signing, etc. He also is so good at waiting now and transitioning to new things. They also gave us a video of the parapro doing probes with him in school so I'll try to get that loaded up soon. We got a lot of good tips for summer as well as working on a few sensory issues we are having at home. I was really happy with the way the meeting went. Here are some specifics:
1) OT, we are gonna work with Tyler on getting him back into the grass with barefeet again this summer. So far this year he's really freaking out. OT suggested we give him lots of deep pressure on his feet before we put him in the grass and then make sure we do something really really fun once he's in the grass to kind of take away from the sensation on his feet until he gets used to it. We are also hoping to find a way to get him interested in the sand this year. We talked about how Tyler avoids certain textures for food (they work on this at food group at school) so we wanted to see what we could do this summer. Tyler has an aversion to spongy/cake like textures so we talked about getting his hands involved in a bunch of spongy type things, maybe I'll play with him in the bathtub with sponges, he loves water so may really like the water squeezing out and that's one way we can get his hands involved in that type of texture.
2) Speech: We spoke a lot about speech today and the balance between Tyler making sounds and signing and how to master signs and hold out for sounds, etc. We also talked about how so many people are involved in Tyler's life and want to help but how hard it is to always communicate what Tyler has learned or what the focus is, etc. and plus you want to make sure to consider that person's natural play style with Tyler and the environment and it's limitations. So we are gonna work on cards for each person that works with Tyler so they have activities/ideas of things to do with Tyler to keep his progress moving forward this summer. We also once again talked about how difficult it is for Tyler to form sounds and that even though he may make a sound or approximate a word one time or in one setting, he may not be able to do it again in another. She reitered that he really struggles to do actions required by his mouth (tips of ways to help this come later)so to make sure we place demands on Tyler that are appropriate for his capabilities. Some of the things we discussed were dad doing a lot of gross motor play which they both love and to really work on sounds for that play and keeping Tyler engaged and wanting to play which is the first steps to communication. We'll be giving daycare a list of activities she can do with books or with group activities and then I'll work on more of the structured verbal behavior type stuff. Working on a schedule of new signs to master and each person will know which signs we are trying to master. He knows many and can do and understand many but he doesn't have them all mastered. They want to ensure that he knows them in many ways, i.e. can he ask for card with a horse on it, can he sign horse to play his horse game with daddy, if he hears "neigh, neigh" will he sign horse, etc. So we talked about ways/ideas to promote all this different type of learning and really grasping each sign we teach him. And then the key is to set up an einvorment where he continually uses the signs he's mastered to make sure they stay in his repertoire. We also talked about oral motor games we can play with Tyler to get those muscles working. Right now he won't really blow when requested and we aren't sure his muscles are strong enough at this point to do so or the connections may not be there yet to know how. So we are gonna work on things that are very fun and easy to do such as breathing into a recorder or harmonica which react to just normal breathing and actual blowing isn't necessary. Basically doing anything we can that promotes the wanting/desire to continue to use those muscles or make sounds. Another idea was when he is making sounds to pat on his back or chest to make a different sound and that new feeling/sound make be reinforcing enough to make him want to make more sounds and that's how words keep flowing. They said it's important for him to be relaxed and having fun cause that's when the words will come flying out so we want to focus on lots of fun things he likes and try to use them to our advantage. Also, as more and more people in our life find out that Tyler has autism and that he can't talk and what that means, etc. I get a lot of questions about speech augmentative speech devices and if we'd ever consider that for Tyler. I can't remember if I ever put this in the blog or not but there was a really cool email on the listservs about this the other day. I think it ws a 7 year old or maybe an 11 year old boy who had autism and could not speak. His mom ended up getting him an iphone (itouch works too) and there is an application for augmentative speech where the boy types what he wants to say and it converts it to language that everyone can hear. He wears it strapped on his arm and it's significantly cheaper than other devices, much lighter and more mobile and as the speech therapist pointed out today, much more "cool".. the last thing you want is a kid with autism is to seem even more dorky that's for sure. So anyway, back to what i was saying. My personal view on it has always been, he's so young, we don't know what the future holds, and I don't want to give him a reason to not have to learn how to speak or not have to learn sign language. Right now he's communicating well, believe it or not, in terms of his degree of autism. he's learning signs very quickly and he is also doing good at eye contact and at gestures and getting your attention and finding a way to get his point across so as long as he has a desire to communicate that way and we give him ways to get his point across, we don't want to augment his speech with technology at this time. It's just not something that we are gonna do for quite some time and by the time we would consider it, we hope he'll be talking:)The speech therapist shared this view, in fact, she wouldn't even give us an age where she'd think it would be appropriate to consider it because we never know what the future holds. I think that was about it for speech.
All and all it was a really good meeting. We are very happy with his progress in school and the way the year went, it actually went by so fast, I can't believe he only has 2 more days of school left!
1) OT, we are gonna work with Tyler on getting him back into the grass with barefeet again this summer. So far this year he's really freaking out. OT suggested we give him lots of deep pressure on his feet before we put him in the grass and then make sure we do something really really fun once he's in the grass to kind of take away from the sensation on his feet until he gets used to it. We are also hoping to find a way to get him interested in the sand this year. We talked about how Tyler avoids certain textures for food (they work on this at food group at school) so we wanted to see what we could do this summer. Tyler has an aversion to spongy/cake like textures so we talked about getting his hands involved in a bunch of spongy type things, maybe I'll play with him in the bathtub with sponges, he loves water so may really like the water squeezing out and that's one way we can get his hands involved in that type of texture.
2) Speech: We spoke a lot about speech today and the balance between Tyler making sounds and signing and how to master signs and hold out for sounds, etc. We also talked about how so many people are involved in Tyler's life and want to help but how hard it is to always communicate what Tyler has learned or what the focus is, etc. and plus you want to make sure to consider that person's natural play style with Tyler and the environment and it's limitations. So we are gonna work on cards for each person that works with Tyler so they have activities/ideas of things to do with Tyler to keep his progress moving forward this summer. We also once again talked about how difficult it is for Tyler to form sounds and that even though he may make a sound or approximate a word one time or in one setting, he may not be able to do it again in another. She reitered that he really struggles to do actions required by his mouth (tips of ways to help this come later)so to make sure we place demands on Tyler that are appropriate for his capabilities. Some of the things we discussed were dad doing a lot of gross motor play which they both love and to really work on sounds for that play and keeping Tyler engaged and wanting to play which is the first steps to communication. We'll be giving daycare a list of activities she can do with books or with group activities and then I'll work on more of the structured verbal behavior type stuff. Working on a schedule of new signs to master and each person will know which signs we are trying to master. He knows many and can do and understand many but he doesn't have them all mastered. They want to ensure that he knows them in many ways, i.e. can he ask for card with a horse on it, can he sign horse to play his horse game with daddy, if he hears "neigh, neigh" will he sign horse, etc. So we talked about ways/ideas to promote all this different type of learning and really grasping each sign we teach him. And then the key is to set up an einvorment where he continually uses the signs he's mastered to make sure they stay in his repertoire. We also talked about oral motor games we can play with Tyler to get those muscles working. Right now he won't really blow when requested and we aren't sure his muscles are strong enough at this point to do so or the connections may not be there yet to know how. So we are gonna work on things that are very fun and easy to do such as breathing into a recorder or harmonica which react to just normal breathing and actual blowing isn't necessary. Basically doing anything we can that promotes the wanting/desire to continue to use those muscles or make sounds. Another idea was when he is making sounds to pat on his back or chest to make a different sound and that new feeling/sound make be reinforcing enough to make him want to make more sounds and that's how words keep flowing. They said it's important for him to be relaxed and having fun cause that's when the words will come flying out so we want to focus on lots of fun things he likes and try to use them to our advantage. Also, as more and more people in our life find out that Tyler has autism and that he can't talk and what that means, etc. I get a lot of questions about speech augmentative speech devices and if we'd ever consider that for Tyler. I can't remember if I ever put this in the blog or not but there was a really cool email on the listservs about this the other day. I think it ws a 7 year old or maybe an 11 year old boy who had autism and could not speak. His mom ended up getting him an iphone (itouch works too) and there is an application for augmentative speech where the boy types what he wants to say and it converts it to language that everyone can hear. He wears it strapped on his arm and it's significantly cheaper than other devices, much lighter and more mobile and as the speech therapist pointed out today, much more "cool".. the last thing you want is a kid with autism is to seem even more dorky that's for sure. So anyway, back to what i was saying. My personal view on it has always been, he's so young, we don't know what the future holds, and I don't want to give him a reason to not have to learn how to speak or not have to learn sign language. Right now he's communicating well, believe it or not, in terms of his degree of autism. he's learning signs very quickly and he is also doing good at eye contact and at gestures and getting your attention and finding a way to get his point across so as long as he has a desire to communicate that way and we give him ways to get his point across, we don't want to augment his speech with technology at this time. It's just not something that we are gonna do for quite some time and by the time we would consider it, we hope he'll be talking:)The speech therapist shared this view, in fact, she wouldn't even give us an age where she'd think it would be appropriate to consider it because we never know what the future holds. I think that was about it for speech.
All and all it was a really good meeting. We are very happy with his progress in school and the way the year went, it actually went by so fast, I can't believe he only has 2 more days of school left!
Monday, June 8, 2009
6/8/09
Tyler and I had a weekend to ourselves for the most part. We got a call from school that Tyler was running a slight fever on Friday and the kid he had been paired all week was out sick with a high fever. So when I picked Tyler up, I took him home with me. Steve and Ben already has plans for the weekend so they just left a day early (to avoid the illness)for their fun. Needless to say, Tyler was not sick, yeah!
On Saturday, he and I went to U of M as planned and he did great. We were meeting a location I had not been before so it's hard to prepare Tyler when I don't know where we are going. We parked in a structure, rode the elevator a couple of times as I wasn't' sure where the walkway was and finally found our way to the building. All went well, he was in a great mood and didn't get anxious about the entry or exit into any of the new places. We met the person we were supposed to see and walked to the lecture hall which was locked. So she gave Tyler the bin of toys to play with while we waited. it only took a minute to get someone to unlock it and it was time to move. So very hard for Tyler to understand why he only got 30 seconds to play Witt he new toys and then someone was taking them away so we told Tyler we were moving and let him carry one side of the bin so he would understand that he got to continue to play with him in just a few minutes.
So all and all things went well, he was great in the room. We kind of talked about ways to interact with Tyler and how to gauge his frustration levels and what kind of responses you can get out of him, etc. Again the point of all of this is training, however, the more happy and successful Tyler is, the more people are gonna learn from it. Anyway, the best part is that she commented on how great Tyler is doing. She hasn't seen him since he was about 17 months old and then diagnosed him with autism. She said he's so much more aware and responsiveness and willing and wanting to learn. I also told her we were in Ann Arbor School preschool and she was very happy to hear that. You know.. it always feels good to have professionals comment on how well he's doign and that we are making the right choices for him.
That's not to say we don't have a long ways to go though. While we were at the lecture hall, when her and I started talking and Tyler was kind of done with the toys, he starting running back and forth on the floor. If Tyler doesn't have anything structured to do and is bored with his environment, he'll run. The more he runs, the more clumsy he gets and he ends up hurtning himself. Unless you've watched him for a significant period of time, it's hard to explain how difficult it is to keep him regulated and not running. Your day is structured aruodn Tyler's learning activities and ways to keep Tyler engaged, happy and or learning so that he's not wearing out teh floor. You have to be thinking one or two steps ahead about what's the next activity. So yeah, he's come a long way but still a long way to go.
So this is the last week of school for Tyler :( Until it picks up again for a few weeks in July. The parapro who works with Tyler each day is gonna be teaching the session so that will be good for him.
Steve's grandma told his mom and him about a book she had read called "The Horse Boy: A Father's Quest to Heal His Son". She said that it truly enlightened her as to how much work it is to raise a child with Autism. She learned through the book the work and time that goes into transporting a child with Autism and all the things that you have to take with you to ensure the child will be okay. She also learned that parents will take what ever steps necessary to treat Autism. Here is a description I found online, I think I may buy it. The Horse Boy is the dramatic and heartwarming story of that impossible adventure. In Mongolia, the family found undreamed of landscapes and people, unbearable setbacks, and advances beyond their wildest dreams. This is a deeply moving, truly one-of-a-kind story--of a family willing to go to the ends of the earth to help their son, and of a boy learning to connect with the world for the first time. It's also been made into a film, here's the clip: http://www.horseboymovie.com/film-trailer.php
Steve and I talked the other night about the fine line between hope and reality. The reality of it is that Tyler may never speak and may never be able to live an independent life; our hope is that he does speak, that he can have relationships and that he can life as an independent adult with family and friends of his own. Although I believe in hope and believe that you have to envision life the way you want it to happen in order for it to come true (self-fulfilling prophecy), as a parent you also reserve yourself a bit or you can get overwhelemed with reality. So as the driver of his education, therapy, planning and future, I have all the hope in the world and believe we are making the right steps towards a brighter future for him and our entire family, in fact sometimes I'm not sure I do enough. But as a parent who loves and adores her boy, I cannot truly believe that he will recover because the pain would be too unbearable for me to have it not happen. Statistically the chances of recovery are slim, he's moderate to severe and has had autism since the beginning, not the regressive form.
On Saturday, he and I went to U of M as planned and he did great. We were meeting a location I had not been before so it's hard to prepare Tyler when I don't know where we are going. We parked in a structure, rode the elevator a couple of times as I wasn't' sure where the walkway was and finally found our way to the building. All went well, he was in a great mood and didn't get anxious about the entry or exit into any of the new places. We met the person we were supposed to see and walked to the lecture hall which was locked. So she gave Tyler the bin of toys to play with while we waited. it only took a minute to get someone to unlock it and it was time to move. So very hard for Tyler to understand why he only got 30 seconds to play Witt he new toys and then someone was taking them away so we told Tyler we were moving and let him carry one side of the bin so he would understand that he got to continue to play with him in just a few minutes.
So all and all things went well, he was great in the room. We kind of talked about ways to interact with Tyler and how to gauge his frustration levels and what kind of responses you can get out of him, etc. Again the point of all of this is training, however, the more happy and successful Tyler is, the more people are gonna learn from it. Anyway, the best part is that she commented on how great Tyler is doing. She hasn't seen him since he was about 17 months old and then diagnosed him with autism. She said he's so much more aware and responsiveness and willing and wanting to learn. I also told her we were in Ann Arbor School preschool and she was very happy to hear that. You know.. it always feels good to have professionals comment on how well he's doign and that we are making the right choices for him.
That's not to say we don't have a long ways to go though. While we were at the lecture hall, when her and I started talking and Tyler was kind of done with the toys, he starting running back and forth on the floor. If Tyler doesn't have anything structured to do and is bored with his environment, he'll run. The more he runs, the more clumsy he gets and he ends up hurtning himself. Unless you've watched him for a significant period of time, it's hard to explain how difficult it is to keep him regulated and not running. Your day is structured aruodn Tyler's learning activities and ways to keep Tyler engaged, happy and or learning so that he's not wearing out teh floor. You have to be thinking one or two steps ahead about what's the next activity. So yeah, he's come a long way but still a long way to go.
So this is the last week of school for Tyler :( Until it picks up again for a few weeks in July. The parapro who works with Tyler each day is gonna be teaching the session so that will be good for him.
Steve's grandma told his mom and him about a book she had read called "The Horse Boy: A Father's Quest to Heal His Son". She said that it truly enlightened her as to how much work it is to raise a child with Autism. She learned through the book the work and time that goes into transporting a child with Autism and all the things that you have to take with you to ensure the child will be okay. She also learned that parents will take what ever steps necessary to treat Autism. Here is a description I found online, I think I may buy it. The Horse Boy is the dramatic and heartwarming story of that impossible adventure. In Mongolia, the family found undreamed of landscapes and people, unbearable setbacks, and advances beyond their wildest dreams. This is a deeply moving, truly one-of-a-kind story--of a family willing to go to the ends of the earth to help their son, and of a boy learning to connect with the world for the first time. It's also been made into a film, here's the clip: http://www.horseboymovie.com/film-trailer.php
Steve and I talked the other night about the fine line between hope and reality. The reality of it is that Tyler may never speak and may never be able to live an independent life; our hope is that he does speak, that he can have relationships and that he can life as an independent adult with family and friends of his own. Although I believe in hope and believe that you have to envision life the way you want it to happen in order for it to come true (self-fulfilling prophecy), as a parent you also reserve yourself a bit or you can get overwhelemed with reality. So as the driver of his education, therapy, planning and future, I have all the hope in the world and believe we are making the right steps towards a brighter future for him and our entire family, in fact sometimes I'm not sure I do enough. But as a parent who loves and adores her boy, I cannot truly believe that he will recover because the pain would be too unbearable for me to have it not happen. Statistically the chances of recovery are slim, he's moderate to severe and has had autism since the beginning, not the regressive form.
Thursday, June 4, 2009
6/4/09
Ok, I'll try again for round 2.
Ty did some cool things over the weekend. 1) He asked grandma to change his diaper, not verbally but physically went to the area, and pulled her hand down (does this when he wants you to sit down) and then laid down to have his diaper changed. Ty has a lot of sensory issues and so knowing that he can feel when he goes and that he doesn't like the feeling, well that means that potty training may be around the corner for him. Now if we can just get Ben no board. We were using time on the computer as a reinforce or sometimes daycare would say how happy it would make mommy or daddy and that was enough, now neither of those things are working so we gotta come up with something new. 2) Grandma thought she heard him say grandma and we thought we heard him say 2 other words. one was duck, while he was watching an Einstein moving with a duck on the screen and the other I can't remember but Steve and I both heard it. 3) Tyler is beginning to do repeat a behavior/action for the sole purpose of getting us to laugh. This is huge and one of the many many questions I am asked through numerous questionnaires and personal interviews we've done. He's not intentionally repeating a behavior, i.e. putting out his hand and pulling it away when Ir each for it cause I start laughing. He's done this with a few different actions. Also, on the way to school this morning, I was looking at him in the rear view mirror and I started talking and laughing and he started giggling and we had a real back and forth moment.. our version of a conversation. it was great.
we are considering changing DAN doctors. The boys need a new pediatrician anyway and we found a pediatrician in Ann Arbor that's also a DAN doctor so we are thinking about making the change there. School will be winding down soon and we have a meeting with his teachers next week to discuss his goals, we did get an update on where he stands with items so I will highlight a few of those.
1) Use two hands together to complete tasks (opening containers, etc.) As compared to March progress, he's doing much better, still needs assistance but they began putting fun toys inside a clear backpack so he has to zip and unzip the bag to get them out. Also, we are working on him taking off his shoes himself which is velcro.
2) Tyler will eat 10 bites of lunch independently. THIS IS GOING GREAT! Although he does sometimes still require assistance getting food on fork, he smoetimes can do it on his own. IN fact Steve said the other night he ate all of his chicken nuggets with a fork all on his own. The spoon he can also do on his own but struggles with anything that isn't' thick and stays on the spoon. He also still does get upset if he gets too much food on him or on his skin (sensory issues) but since he never used to even touch his food or utensils.. this is leaps and bounds in the right direction.
3) Tyler will following 10 instructional directions given verbal prompts and pictures. He has mastered 7 so far which include stand up, sit down, come here, give it to me, line up at door, stop, and go. Working on pick it up, throw away and put it in.
4) Tyler will give/touch/point name item out of a field of 4 - 5 pictures or objects. Mastered. Tyler can identify 106+ items.
5) Tyler will learn 20 new signs for desired object. This is in progress, he has and uses a lot of signs or at least tries but unless you know Tyler and what he wants, it's hard to understand all of them because he does them so quickly and tends to scroll (go through many signs) to find the right one. So school (and home) are working to clean up those signs. They are currently working on book cookie swing ball chip horse and cow. They give him multiple opportunities to work on these signs and really master them so we'll also be supporting this at home and helping to shape them into very clear signs. So hopefully that gives you an idea of what he's been doing at school.
As you know we closed out the study 2 weeks ago at U of M (2nd study he's been involved with). we received a call from Susan Risi (she is the one that officially diagnosed Tyler) asking if we'd be interested in having Tyler participate in an ADOS-T training session. Here is a link that kind of describes the ADOS if you are interested.....http://www.child-psych.org/2009/05/diagnosis-autism-toddlers-new-ados.html Anyway, of course we want to do anything we can do to help U of M since they've been so helpful to us. Also, this is our small way of helping so many other families. If you read the article in the link above, you'll see that the ADOS-T allows kids to be diagnosed at a younger age which would promote early intervenion and better outcomes. So yeah, we were definitely interested. But I wanted to talk through the details with her and fully understand the requirements. I know what the ADOS-T entails but with Tyler it's important to know, where it will take place, how many people involved, are they watching and/or interacting, and can I step in and assist when necessary, i.e. if someone is asking him to do something and he does not demonstrate he can do it, but I know he can, can I jump in and assist. Etc. etc. Ok so anyway, Susan and I talked yesterday and it's gonna be held in a large lecture hall with about 70 people watching but she'll be the only one administering the evaluation. She's great, having worked with many kids on the spectrum, she is quite aware of the difficulties this environment poses. So we agreed to strategically position the people watching (she recently did this somewhere in Chicago) and then strategically position me to Tyler as well. We agreed that we would remind people in advance to not clap or cheer or be overly loud at any time but especially if they see Tyler be successful.. clapping overstimulates him. Tyler is used to being evaluated in a clinic which is very very small and only has one or two people in the room. So the lecture hall is not only new but also very open which typically leads to concentration difficulty for Tyler. So we agreed to meet this Saturday (Ben and dad will be at a company picnic) in the lecture hall to start "practicing?" which really is just getting Tyler used to the environment and to understand that demands will be placed on him in that environment and we are gonna be loud and obnoxious and just try to desensitize him just a bit. The purpose of the training is to train people from around the world (literally)on how to administer the ADOS-T so we want to make sure it's as successful as possible, while ensuring Tyler is as comfortable as possible. Now, I'm afraid I'm making it sound like this is a horrible evaluation, it's not at all. They are really good about making everything fun, he'll participate in a mock birthday party and play with balloons, etc. so it's not this awful string of events that he has to go through. The evaluator is really good at getting to know what the kids think are fun too and making sure to keep them engaged and happy :)
OK, I think this is a long enough blog for now... take care
Ty did some cool things over the weekend. 1) He asked grandma to change his diaper, not verbally but physically went to the area, and pulled her hand down (does this when he wants you to sit down) and then laid down to have his diaper changed. Ty has a lot of sensory issues and so knowing that he can feel when he goes and that he doesn't like the feeling, well that means that potty training may be around the corner for him. Now if we can just get Ben no board. We were using time on the computer as a reinforce or sometimes daycare would say how happy it would make mommy or daddy and that was enough, now neither of those things are working so we gotta come up with something new. 2) Grandma thought she heard him say grandma and we thought we heard him say 2 other words. one was duck, while he was watching an Einstein moving with a duck on the screen and the other I can't remember but Steve and I both heard it. 3) Tyler is beginning to do repeat a behavior/action for the sole purpose of getting us to laugh. This is huge and one of the many many questions I am asked through numerous questionnaires and personal interviews we've done. He's not intentionally repeating a behavior, i.e. putting out his hand and pulling it away when Ir each for it cause I start laughing. He's done this with a few different actions. Also, on the way to school this morning, I was looking at him in the rear view mirror and I started talking and laughing and he started giggling and we had a real back and forth moment.. our version of a conversation. it was great.
we are considering changing DAN doctors. The boys need a new pediatrician anyway and we found a pediatrician in Ann Arbor that's also a DAN doctor so we are thinking about making the change there. School will be winding down soon and we have a meeting with his teachers next week to discuss his goals, we did get an update on where he stands with items so I will highlight a few of those.
1) Use two hands together to complete tasks (opening containers, etc.) As compared to March progress, he's doing much better, still needs assistance but they began putting fun toys inside a clear backpack so he has to zip and unzip the bag to get them out. Also, we are working on him taking off his shoes himself which is velcro.
2) Tyler will eat 10 bites of lunch independently. THIS IS GOING GREAT! Although he does sometimes still require assistance getting food on fork, he smoetimes can do it on his own. IN fact Steve said the other night he ate all of his chicken nuggets with a fork all on his own. The spoon he can also do on his own but struggles with anything that isn't' thick and stays on the spoon. He also still does get upset if he gets too much food on him or on his skin (sensory issues) but since he never used to even touch his food or utensils.. this is leaps and bounds in the right direction.
3) Tyler will following 10 instructional directions given verbal prompts and pictures. He has mastered 7 so far which include stand up, sit down, come here, give it to me, line up at door, stop, and go. Working on pick it up, throw away and put it in.
4) Tyler will give/touch/point name item out of a field of 4 - 5 pictures or objects. Mastered. Tyler can identify 106+ items.
5) Tyler will learn 20 new signs for desired object. This is in progress, he has and uses a lot of signs or at least tries but unless you know Tyler and what he wants, it's hard to understand all of them because he does them so quickly and tends to scroll (go through many signs) to find the right one. So school (and home) are working to clean up those signs. They are currently working on book cookie swing ball chip horse and cow. They give him multiple opportunities to work on these signs and really master them so we'll also be supporting this at home and helping to shape them into very clear signs. So hopefully that gives you an idea of what he's been doing at school.
As you know we closed out the study 2 weeks ago at U of M (2nd study he's been involved with). we received a call from Susan Risi (she is the one that officially diagnosed Tyler) asking if we'd be interested in having Tyler participate in an ADOS-T training session. Here is a link that kind of describes the ADOS if you are interested.....http://www.child-psych.org/2009/05/diagnosis-autism-toddlers-new-ados.html Anyway, of course we want to do anything we can do to help U of M since they've been so helpful to us. Also, this is our small way of helping so many other families. If you read the article in the link above, you'll see that the ADOS-T allows kids to be diagnosed at a younger age which would promote early intervenion and better outcomes. So yeah, we were definitely interested. But I wanted to talk through the details with her and fully understand the requirements. I know what the ADOS-T entails but with Tyler it's important to know, where it will take place, how many people involved, are they watching and/or interacting, and can I step in and assist when necessary, i.e. if someone is asking him to do something and he does not demonstrate he can do it, but I know he can, can I jump in and assist. Etc. etc. Ok so anyway, Susan and I talked yesterday and it's gonna be held in a large lecture hall with about 70 people watching but she'll be the only one administering the evaluation. She's great, having worked with many kids on the spectrum, she is quite aware of the difficulties this environment poses. So we agreed to strategically position the people watching (she recently did this somewhere in Chicago) and then strategically position me to Tyler as well. We agreed that we would remind people in advance to not clap or cheer or be overly loud at any time but especially if they see Tyler be successful.. clapping overstimulates him. Tyler is used to being evaluated in a clinic which is very very small and only has one or two people in the room. So the lecture hall is not only new but also very open which typically leads to concentration difficulty for Tyler. So we agreed to meet this Saturday (Ben and dad will be at a company picnic) in the lecture hall to start "practicing?" which really is just getting Tyler used to the environment and to understand that demands will be placed on him in that environment and we are gonna be loud and obnoxious and just try to desensitize him just a bit. The purpose of the training is to train people from around the world (literally)on how to administer the ADOS-T so we want to make sure it's as successful as possible, while ensuring Tyler is as comfortable as possible. Now, I'm afraid I'm making it sound like this is a horrible evaluation, it's not at all. They are really good about making everything fun, he'll participate in a mock birthday party and play with balloons, etc. so it's not this awful string of events that he has to go through. The evaluator is really good at getting to know what the kids think are fun too and making sure to keep them engaged and happy :)
OK, I think this is a long enough blog for now... take care
6/4/09
Ugh... I had so much written and lost it all :(. In the mean time, please go to the following link and sign this petition, lots happening at the capital for the autism insurance bills.
http://www.housedems.com/petitions/protect-children-with-autism/
http://www.housedems.com/petitions/protect-children-with-autism/
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